Tag Archives: teen

Day 6 – Gluten Frenzy Continues

We are currently on day six of our gluten consuming adventure/experiment.  Jessie is taking the attitude that she probably does have Celiac Disease and is using this opportunity to eat as much bread, pasta, etc. as she can.  So far, believe it or not, she has had absolutely no reaction.  I am withholding excitement because, well, I’ve just learned to withhold excitement AND I’ve found out that while most celiacs have immediate reactions, it’s possible to not react for 5-7 days or to be asymptomatic.  So, I think we both prefer to remain a bit skeptical.

At any rate, Jessie is, at this moment reheating leftovers from Olive Garden, including the garlic breadsticks!  Yes, the girl is having a little party for herself.  

Unfortunately, the insomnia returned about two weeks ago.  I’ve got a call in to the pediatrician.  If we get incredibly lucky and a miracle occurs tomorrow, Ms. Pediatrician and Ms. Specialist in North Carolina will have a little telephone pow-wow to confer on the matter before coming up with a solution/prescription.  Could that actually happen?  It sure would be nice!  

Jessie has tried melatonin, tylenol pm and does pilates to relax not to mention the nortriplyline and Lyrica she’s already taking that should assist with sleep.  At least it did until about 7 months ago.  Nothing is helping now.  It seems like the bane of her existance these past 7 months has been migraines, which were taken care of with the diagnosis and treatment for hypotension, and insomnia.  The insomnia is a stubborn little nuisance that doesn’t want to go away.

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Day 2 – The Gluten Frenzy

We’ve made it to day two of our experiment. Yesterday, Jessie stuck with only the bottom half of a bagel with no side effects.  She said that she had a little stomach gurgling last night, but that’s it.  Today, she’s becoming quite bold.  She ate the TOP half of the Panera bagel for breakfast and is currently having a couple of small pieces of a Totinos cheese pizza for lunch.  I may have to draw the line here on gluten for today as the prospects do frighten me a bit.  She’s like a vampire who catches the scent of blood (can you tell I’m reading Twilight?)  Once Jessie gets her first taste of real bread, she becomes crazed. 

I’m curious about how long your system can possibly delay a response.  Google has told me nothing on the topic.  I know that you can feel side effects almost immediately, but can there be a delay?  Hmm…the question of the day.  I guess we could find out, huh?

Updates to follow.  Stay tuned, if you dare.

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A New Day, A New Doctor

We went to see the new PCP today and really liked her, thank goodness!  She said the magical words Jessie’s been hoping for all year; she’s hoped for these words even more than the possibility of hearing, “I don’t think you have Chronic Fatigue.”  The new doctor said, “I’m going to send you to the gastroenterologist to do a recheck on this Celiac thing.  It may be a good idea to have another endoscopy.”  Yep, the girl is holding out hope that she can eat wheat.  Of course, I quickly added that she needs to be prepared to hear that she does indeed have this disease.  

In all honesty, we are a little confused as to what, exactly, she’s having trouble with.  Jessie ate Chick-fil-A chicken nuggets last year and didn’t have a reaction.  She continues to eat the prized nuggets regularly without side effects.  In every other aspect of her life, she is gluten-free.  Yet she has a reaction when she eats cross-contaminated rice.  I guess a second check would be interesting.  

The doctors are certainly making their money off of us this week.  We go back to the cardiologist tomorrow for a recheck. He’ll have to get the sad news that his experiment failed and Jessie is back on all of the medication.  

I know I’ve said this before, but wouldn’t it be nice if you could just kidnap all of your doctors and put them in a room together?  Then they would discuss their various “theories” and ultimately reach the perfect solution or cure.  That’s just not real life, is it?  I guess I’m dreaming again.  Shame on me.

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Where Are We In This Game?

Yesterday was another bad day, but not quite as bad as the day before.  I know, depressing start.  Anyway, Jessie woke up again after having a terrible night.  She got up, ate breakfast and I sent her back to my bed.  She then slept until around 12:30.  I think that was the difference in making the day a little better for her.  

Her goal was to get to school in the afternoon, but then the her shower zapped what energy she had. As a result, Jessie worked from home the rest of the day.  As the day went on she did begin to feel a little better.  I took this as a good sign?  I add the question mark because we’ve been here so many times.  You just feel as if you go round and round with the cycle of symptoms so much that, at a certain point, you are totally confused.  Maybe writing this down will help me; at least I’ll have a log to refer back to!  

Right now the major symptoms are insomnia, really bad joint and muscle aches interspersed with headaches.  I now wonder if this is something that is nonstop without medication?  Does it follow a cycle of remission and relapse without medicine?  Does the medicine just lessen the occurrence of relapses and give you the ability to live a more normal life?  

This is interesting to me because, after 3+ years of dealing with this illness, I was curious (along with all of Jessie’s doctors) to see if she was indeed getting better and that this disease had worked it’s way through her system or if the disease was still as strong as it was in it’s earlier stages and would resurface with the absence of medication.  My thinking is that, unfortunately, it’s still strong.  I think Jessie is still holding out with the hope that the pain she’s dealing with right now comes from her body’s withdrawal from the medication.  (When I say medication, I am referring to Pamelor, which helps control insomnia, headaches and muscle pain as well as  Lyrica, a pain medication.  She is also doing without all of the supplements for the time being and is only taking the Florinef, which helps the hypotension.)  

Oddly enough, the color that we noticed in her cheeks in the earlier stages of taking Florinef has disappeared.  It’s clear that I am totally confused and have more questions than answers.  Again, I apologize for talking in circles.  

I guess we’ll hold out until next week.  I think we go back to the cardiologist on Monday or Tuesday and then we will have a follow-up telephone appointment with her doctor from North Carolina.  What I’d REALLY like is for both doctors to consult one another on the phone to decide on a plan of action.  Is that too much to ask?  I think not!

It’s Thursday morning.  The rain hasn’t come yet.  I’m feeling strangely hopeful today.  Let’s put on our happy face and convince the world that, indeed, TODAY will be a good day!

“Once you choose hope, anything’s possible.” – Christopher Reeve

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What Do You Get When You Combine Three DVDs and an Oscar?

 

Chick Flicks

Chick Flicks

You get the ultimate combo that makes a teenage girl’s heart go pitter-patter.  Well, one of the things anyway.  Jessie’s friend, Tommie, dropped by yesterday with three DVDs.  The DVDs added in with the Oscars on Sunday night guarantee a weekend of dreamy chick television.  I will probably participate in the Oscar part and Thoroughly Modern Millie.  The others go right over my head.

We’re on a bit of a level plain now with symptoms.  The headaches are ever present.  Jessie continues to feel puny in general.  I know this because she baked gluten-free chocolate chip cookies last night – always a positive sign that my daughter is feeling puny.  Well that or actually saying that she feels bad, which she doesn’t do very often.  Actions speak louder and all that.  *Hopefully the recipe will follow when Jes wakes up and I get it out of her.  Check back later.

You know how you turn to certain things or activities when you don’t feel well?  For Jessie it’s baking.  Granted it will probably take 2 – 3 hours to bake one 30 minute recipe of cookies, but she receives tremendous comfort in baking.  When you have chronic fatigue, you are up working for maybe 15 minutes, then you sit for 15 minutes, then up for 15 and so on until the task is completed.

Anyway, I believe that the movies, the Oscars, chocolate chip cookies and maybe a little microwave popcorn is just what the doctor has ordered for the next couple of days.

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